I've lived with my mom for over 3 years. I am her primary caretaker - actually I am her ONLY caretaker. She's 86 and has degenerative spine disease and dementia. We do not have a good relationship at all. When I moved in here I had to start living without my kids because there's no room for them here. There's no room for ME here. There's no room for just my mom here. The house is small and she's a hoarder so it's just a mess everywhere you look. I've had my clothes and shoes and etc. in boxes all these years because there 's not even a closet or room for anything. I have to work from home because she cannot be left alone for any length of time. She's not recognized me as her daughter for about the last 8 months or so. She calls my cell phone over and over, leaving frantic voicemails, asking where her daughter is, why hasn't she heard from her daughter, is her daughter ok....I am literally 10 feet away from her when she does this. I have a brother in another state who has not helped at all, not one single little bit. He barely calls her. He will not help her financially so I've had to take freelance legal research jobs from here. I took over all of her bills except for the rent and it comes to about $800 a month in bills and I'm paying these and trying to keep everything paid and in good standing with these small, inconsistent, unreliable freelance jobs. I am either working or I am looking for work or I am sleeping. I never do anything else. I stay in a bedroom because my mom and I do not get along and it's become so much worse now that I live here. Part of it is my fault because it upsets and hurts me that I am 100% responsible for her care and safety and meals and meds and bills yet she treats me like dirt under her feet. For the past 2 years or so I have felt that the ONLY purpose I serve is to take care of her and pay bills. Period. That's it. I don't see my kids much - they are at the age where kids start living their own lives and I understand that but I miss them so much and it hurts so much feeling excluded. They go on vacations each year with my ex-husband and the last vacation I was able to take them on was in 2008. I feel like I've been removed from my own family. Everyone goes about their day and all and it's just assumed that I'm ok here. I am not ok here. But growing up my mom let us feel responsible for her happiness, and I felt that way more than any of my siblings. I took it all on even as a 5 year old child. I grew up with this responsibility, I grew up with my main goal being to not make my mom worry, to keep my mom happy. As a teenager when I'd go on a date the very first thing I'd do once we got to the restaurant or theater or etc was find a phone and call my mom. All of her worry and unhappiness she let her kids carry. So I am so sensitive to that, I am so determined to never do that to my kids, and I haven't. It's been hard because I'm a huge worrier and I'm really good at worst-case-scenarios but I've kept to my determination to never put my own struggles on the backs of my kids. So while they know basically how things are for me I don't ask them to try to help me. There's really nothing they can do anyway. But there's a physical distance now along with the emotional one and it breaks my heart. I cling to them more than normal because of what I'm going thru, but they're doing that very natural, normal pulling away that young adults do and I know I must let them do that. It doesn't help anyway to leave for lunch or a movie because all I do is worry and my mom calls me the entire time I'm out. She's forgotten now that she isn't to take my dog out (he's huge and he's strong and she'd be pulled and get hurt or he'd take off or both, it's happned before) so I'm always scared of that. She calls asking where I am, when am I coming home, saying the dog needs to go out, the dog is hungry, can I stop by the grocery store for this or that. Being out doesn't help me. I feel hopeless, I do not know how to make this situation better and therefore it's getting worse. She has no money for assisted care or anything like that. The arguments, her refusal to just let me do what I need to do to take care of her, my own feelings of isolation and depression and financial worries......being in this tiny tiny cluttered house.....and now on top of everything else I am told every day that I am not her daughter. It feels like my entire identity is being erased. I used to be a wife, a sister, a mother, a friend, a daughter, an employee - and now I am none of those things and I feel like I am no one and nothing at all. I know this sounds like self-pity but it's really not. I'm a very matter of fact person and to me these are the facts of my life. I am always wary of talking about it because I don't want people thinking I'm just feeling sorry for myself. I am sorry this is so long and rambling - maybe I just needed to get these words out for myself. I wish I knew what to do.
I am depressed. I am very depressed. Everything I need to do becomes so huge and so exhausting I just end up not doing it. One night I realized after coming into the bedroom with my dog for the night that I'd forgotten and left his water in the kitchen. I had to go back out to get it and instead I just sat on the bed and cried. It's jeopardized my jobs because the more depressed I become the more I procrastinate doing the things I have to do. I am taking antidepressants so maybe I'd feel even worse without them. I don't know. I certainly don't want to put that to the test. I am calling her case worker tomorrow but I know the options will be to maybe have someone visit a couple of times a week, maybe a month or so of home health, I'll be given a list of aging care agencies. Having someone visit will not help me. Home health will not help me. And I've used those lists of agencies a lot in the past. For me, personally, the only way to help me is for me to not have to live in this house in this situation any longer. But that's not possible. She can't afford to go to a home. I moved in because I knew being in her own home surrounded by her own things with her dog would be better for her than having to leave and possibly not be able to take her dog with her. So I thought i was doing the right thing because I know how it feels to not have your home, your belongings, and I wanted her to be able to stay. And she has been able to stay, but in the process I've basically disappeared. I've always been a fighter, but lately I've not been. I've felt too drained to fight. And actually no one can help me because that'd require someone actually taking my place and that's not going to happen, and the fact that there's really no solution frustrates everyone and it's easier to just assume or pretend I'm ok than to ask me and find out I am not. I understand this. When life doesn't get better, it frustrates people who are trying to help you so they gradually disappear. I get it. And that's where I am right now. Thank you for responding to my post, I appreciate it.
It sounds like your mom has a lot of physical problems in addition to her dementia. I might explore what level of care that she needs with an expert or her doctor. I'd make sure they understand her symptoms and what she is not capable of doing due to her ailments.
I'd explore what types of care that she may be entitled to, based on the level of care that she needs. She may qualify for Medicaid long term care or a state sponsored program that pays for Memory Care AL, for certain seniors or the disabled. There may be in-home assistance, if you think that would be a good option. Your county social services or counsel on aging may be able to provide information on where to get an application.
It's often problematic when the caregiver already has issues with the person they are caring for. Plus, 24/7 caregiving for a physically ill patient who has dementia is really unrealistic. Anyone would need respite time. I'd get that ASAP, so you can rest and consider your options.
I'd also try to lower the expectations for a person who has dementia. They are not likely to be able to stay at home alone, manage pets, process or reason caring for themselves. After a certain point, it is risky to leave them alone. Plus, they can't remember instructions. We as caregivers have to accept that the dementia patient is not able to provide us with appreciation, comfort or gratitude. It's not their fault, it's their illness. Maybe, it will take the sting out, if you can view it that way and not take it personally.
Maybe, you would benefit from having the love and support from your children. Can they come and visit while you make your plans? It sounds like you are down. I might check with my doctor to make sure that I was okay. I'd rule out depression, which can make you feel low too.
I hope you can get the support and help that you need. Let us know how things go.